Free EB Information Resources

Frequently in my role as a New Family Advocate with DebRA, I’m asked “Where…” Where can I find information, where can I find free supply samples or other resources, where can I find other families going through what we’re experiencing? It’s a common concern. No one wants to feel alone, especially when we’re faced with something unfamiliar, and let’s face it, somewhat complicated and certainly frightening as a parent, as a person living with EB or as a friend or loved one trying to show support.

These are just a few of the free resources I’ve come upon in my ongoing search for tools and information for EB families. (Please note: the first three links below are to posted PDF files not web pages, so don’t be alarmed when prompted about continuing to open the file.) I hope you find these useful and welcome suggestions for other resources worth checking out. Feel free to email me at leslie.rader@hollisterwoundcare.com with your own recommendations.

*The following suggested links are provided as a courtesy to the EB Resource community to help its members find references easily and is for informational purposes only. The links referenced are not intended to be a substitute for the advice of your personal health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your health care provider.

Sources:
DEBRA International
Stanford School of Medicine, Dermatology Department, Genetic Skin Center
National Institute of Arthritis and Musculoskeletal and Skin Diseases
DebRA of America
EB Friends

Related Posts:
Learning from Each Other, Part 1
Learning from Each Other, Part 2
The Everyday Challenges of New Parents


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